On the occasion of international Rare Disease Day 2025, we are beyond thrilled to host the voice of patient advocate Dr. Albert Freedman. He tells the story of his son, Jack, below.
On Rare Disease Day, it is most important to honor the experiences of patients and families around the world who are affected by rare diseases.
For rare disease patients and their families, rare disease day is every day.
As a practicing psychologist specializing in supporting the needs of patients and families affected by rare disease, I see and hear the challenges our families experience every single day. As the father of an adult son who lived to the age of 26 with Spinal Muscular Atrophy (SMA), I experienced these challenges myself every single day for 26 years.
Living with a rare disease is hard.
It’s hard to live with uncertainty – rare disease patients and their families are often riddled with anxiety because they do not know what the future will hold for them.
It’s hard to maintain friendships – rare disease patients often feel isolated because they can’t do things the same way others can and their friends don’t stick with them as time passes.
It’s hard to navigate the health care system – rare disease patients often feel misunderstood, unheard, and frustrated by the lack of knowledge of their condition by health care professionals.
It’s hard to manage financially – rare disease patients are often challenged by the combination of the high costs of their medical care and limited ability to earn an income because of their condition.
It’s hard to find partners – rare disease patients often feel sad because they are alone.
Living with a rare disease is hard.
Remarkably, despite all of these challenges, the majority of rare disease patients and their families – following a period of psychological reorientation upon receiving the news of a rare disease diagnosis – move forward with their lives with extraordinary grace and dignity.
Remarkably, despite so many challenges, so many rare disease patients and their families demonstrate strength, courage, and resilience, and a sense of perspective about what is truly important.
No one ever chooses a rare disease. We are all in a club none of us choose to join. But we do the best we can, with the support of others – like my friends at Volv Global – to move forward with our lives and to live our lives to the fullest.
So as we pause to acknowledge Rare Disease Day, let us do whatever we can do to provide meaningful, authentic, and substantive support – not only today but every day we possibly can – to the patients and families who need help.
Dr. Al Freedman
Psychologist, Consultant, Keynote Speaker & Father
Dr. Al Freedman Psychologist/Consultant | rarecounseling.com
I am a psychologist and rare disease dad, and I’ve been living and working with individuals and families affected by rare disease for over two decades. I’m uniquely prepared to support families affected by disability and complex medical conditions and the professionals who serve them.
My son, Jack, lived with Spinal Muscular Atrophy for 26 years. I am grateful to have learned a great deal from Jack and everyone who supported my family over the years. I use what Jack taught me, my professional training as a psychologist, and my early experience as an educator to provide counseling and consultation to families, advocacy organizations, pharmaceutical companies, healthcare organizations, and schools.
